Alzheimer’s seems to be serendipitously (is that word only for happy things?) popping up all over in my life lately. I saw a reference to a PBS special on Alzheimer’s on my Facebook feed last night, had a conversation about relatives with the disease a few days ago, and then, I read this book.
Still Alice is fiction told from the point of view of a research psychologist who is progressing, or regressing, into the fog of early-onset Alzheimer’s. I thought the author really understood the experience of a person who is diagnosed and then lives with the disease of Alzheimer’s. I suppose she ought to understand: she has degree in Biopsychology and a Ph.D. in Neuroscience from Harvard University. But degrees don’t alway equal empathy and insight. The book is realistic and yet compassionate, not without hope. It would be a hard read for someone who has a relative or friend with Alzheimer’s, as do I, but ultimately I think it is encouraging rather than discouraging.
Lisa Genova seems to specialize in novels about characters with devastating injuries or illnesses and the family dynamics involved in such illnesses. In addition to Still Alice, she’s also written Left Neglected (about traumatic brain injury?TMI), Love Anthony (about an autistic child), and Inside the O’Briens (a father with Huntington’s Disease). I also read that there’s a movie based on the book Still Alice. Has anyone seen the movie or read any of Ms. Genova’s other books? What did you think?
“I used to know how the mind handled language, and I could communicate what I knew. I used to be someone who knew a lot. No one asks for my opinion or advice anymore. I miss that. I used to be curious and independent and confident. I miss being sure of things. There’s no peace in being unsure of everything all the time. I miss doing everything easily. I miss being a part of what’s happening. I miss feeling wanted. I miss my life and my family. I loved my life and family.”
“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me.”
I have two relatives currently living with Alzheimer’s, and one who died with Alzheimer’s, and what I have observed in them is that they have and had much the same personality before and after the onset of Alzheimer’s as they did before. All three of these relatives were joyful, giving, selfless people before they began to lose their memories and intellectual abilities. And they are still that kind of people, sometimes frustrated by their inability to recall things or to perform simple tasks, but still joyful, still generous, still themselves. I don’t know if that’s true of everyone who has Alzheimer’s. Maybe some people do truly lose themselves and become other. Maybe my relatives still will lose themselves. I hope not. Right now, they laugh a lot about their disabilities and memory lapses, and they know they are loved, even when they can’t recall the names of those who are their caregivers. May it always be so.